Long time no speak, hope your well.
I’ve just had a bone marrow biopsy as my blood work has been poor over the last 7 weeks. This has led to not getting any chemo in the last 7 weeks too. Up until this time I was doing good, and blood work was all good too.
Is this normal to be leaving it this long? I can’t seem to get any answers from my doc . Have you heard anything like this before?
Sorry I’m just frustrated. I feel like I’ve just been left to get on with a terminal illness
Oh @Alan-duffy great to hear from you again, but so sorry to hear that you are frustrated.
You ask if it is normal to be leaving it this long, that is a question for your doc or specialist nurse. Is there a normal I wonder?
I write all my questions down and I am pleasantly assertive and do not leave the office until my questions are answered.
You can always ask for a second opinion.
It is the not knowing that gets me.
Please let us know how you get on.
Look after yourself and please keep posting.
Yeah I get that. It is a specialist that should be giving me answers. Just can’t get any yet!! ust wondering if anybody else has been or is in the same boat as me.
Hi @Alan-duffy I hope someone will be able to share their experiences for you.
You can always contact your hospital PALS (Patient Advice and Liaison Service) for assistance if it comes to it.
Keep paddling that boat and don’t give up.
I think contacting PALs is a good suggestion by @Erica, especially if you are not receiving the communication that you need.
Please keep us updated on how you get on.
Sorry to read that you aren’t getting any answers in regards to your chemo or blood results and are feeling frustrated.
Do you mind me asking what treatment have you been having and what type of blood cancer you have?
Sometimes a Consultant will stop chemotherapy to be able to better assess the blood counts whilst the bone marrow isn’t affected by the chemo. Depending on the type of blood cancer, this can mean that they are looking for whether the blood counts drop, increase or stay the same.
Another reason for stopping treatment can be because this isn’t working for that type of cancer and they need to check if there are any new genetic faults or changes that may be resistant or refractory to the current treatment and the patient may need a different regime. Sometimes it can take a few weeks to get true readings, depending on the chemo you have had, and how long you have been having it for. Also, it is not good practice to keep prescribing a treatment that doesn’t or won’t work for that patient, and by stopping the treatment is often the only way to know if it is the treatment causing the change in counts or the patient’s cancer.
I am guessing your Haematologist will want to know what is happening in your bone marrow before either re-starting your chemo or discussing the next steps (for example different treatment options, trials, transplant, immunotherapy or supportive treatments).
Do you have a clinical nurse specialist you can contact? They may be able to reassure you on how long your biopsy results will take to be reported back, and also the follow up appointment if you call them.
Or you could try calling the secretary to your Consultant and asking if there is an appointment pending for you.
If you would like to talk any of this through, please do call our Support Services team: 0808 2080 888 for more information or support.
Take care, Heidi.
Thank you so much for replying to me.
My condition is Myelodysplastic syndrome (MDS) and was diagnosed in Oct 22. My chemo is azercitidine and was every 28 days up until 8 weeks ago, where I’ve not had anything.
The information you have provided is a lot more than I’ve been provided with by my team. This is also what what me and my family have been thinking,
Thank you for letting me know more specifically about your treatment and Myelodysplastic syndrome (MDS).
Yes, your Consultant will be wondering what has happened with your blood counts and the only way to tell what is going on with the counts is to biopsy the bone marrow and send it away for assessment and genetics. Sometimes a new genetic fault is detected and may alter the treatment pathway.
I am sorry that all of this has not been communicated to you, and you have been left wondering what the next steps are and why you haven’t had any Aza recently.
There may be nothing your Consultant can do or suggest to you without having the results from the biopsy, hence the wait you are having at the moment. I am sure there will be lots happening behind the scenes (this is never told to the patients) with an MDT (multi-disciplinary team) meeting for the Histopathologist and Haematologist to discuss your blood test results and make a decision based on these, in regards to treatment.
Hopefully your results won’t take too long to come back.
Do call us if you’d like.
Best wishes to you and your family. Heidi.
Hi Heidi and @Erica
Thank you again for providing me with this information, which again is more than I was told.
Just an update. I was at the hospital today and received the following information.
- The Myelodysplastic syndrome (MDS) is still about 18-19% blasts, so it’s not progressed to Acute myeloid leukaemia (AML) or Chronic myeloid leukaemia at the minute.
- The current azercitidine is not working anymore.
- I’m being referred to another clinic, which I will be offered a trial drug and chemotherapy.
Hi @Alan-duffy, thank you for updating us with what happened today. How are you feeling about the pathway that’s been suggested to you? If you want to talk about things please don’t hesitate to reach out to us (0808 2080 888). We also have a Clinical Trials Support Service if you feel you need any support around the trial (Clinical Trials | Blood Cancer UK).